Did You Mention Your Defibrillator and Pacemaker in Advance Directives

Medical ethics deals with choices made by clinicians and patients and the duties and obligations that follow. Central to medical ethics is informed consent and patient autonomy, i.e., the right to make decisions over one’s own body.

As of this writing, physician-assisted suicide/medical aid in dying is available in nine states and the District of Columbia. Between this option for patients at the end of life and the right of patient autonomy, physicians walk a fine line, especially in states where assisted suicide is not legal.

Case studies in medical ethics offer a real-life look into the dilemmas that medical professionals face when a patient’s right to make decisions about their treatment creates choices.

The following case study by Tarris Rosell, PhD, DMin, and Rosemary Flanigan, Chair at the Center for Practical Bioethics, focuses on an experience that may be familiar to many of the 200,000 to 400,000 US patients who have pacemakers implanted each year.

Mr. Perry (name changed) was 83 years old and had several medical problems. He had spent the past several months in and out of hospitals and rehab. Before that, he lived independently in a small Midwestern town. Widowed many years ago, he subsequently enjoyed the company of a lovely lady friend who lived down the street from the Perry home. He had five adult children and numerous grandchildren.

Life should have been relatively good for this octogenarian. But life was not good. Not anymore. “My body is all worn out. I’m worn out. Don’t want to do this anymore, Doc. They say I can’t go home and be safe. And I’m NOT going to a nursing home. No way! Just stop that little gadget that shocks me and the part that keeps my heart going. I want them stopped. Yes, the pacemaker, too. A magnet will stop it, right? Just do it. Please.”

Mr. Perry had both an internal defibrillator and a pacemaker. The defibrillator would shock him each time his heart rhythm went seriously off course. A pacemaker uses electrical impulses to prompt the heart to beat at a normal rhythm and does not cause pain for the patient. The shocking from a defibrillator was painful, so the cardiologist had no issue with deactivating the defibrillator.

Why have him experience pain when he had decided that he just wanted to die? A Do Not Resuscitate order was written and placed in Mr. Perry’s chart. No more shocks for him. No nursing home or rehab or hospitalizations or medications.

However, Mr. Perry did not want his pacemaker either. “I’m tired of fighting.” That stunning request generated an ethics consult. The question in minds of clinicians was clear but the answer was not. Would that be ethically respectful of this patient’s autonomy? Or would it be physician-technician assisted suicide?

“If we stop the pacemaker, Mr. Perry, you will die within a few minutes.” (Note: this is not always the case)

“Yes, I know. I’m tired of fighting. Please.”

Mr. Perry had the full mental capacity to make such a decision. If he was at all compromised, the ethics committee would have had to consult his designated healthcare proxy or surrogate to better understand his stated wishes. Since he had the capacity, this hospital ethics committee respected his wishes and Mr. Perry died peacefully surrounded by family and a family friend. His final words were “thank you.”

Sadly, however, too much is left to chance for most patients. One survey showed that 77.6% of cardiologists had been involved with the deactivation of a pacemaker but only 34.4% were comfortable with the decision. This attitudinal hesitation by a cardiologist can unnecessarily shift an extraordinary emotional burden onto a fully capacitated patient as well as onto a family seeking to respect wishes. Imagine the turmoil experienced by the surrogate when a physician exhibits discomfort with such a terminal decision. It can leave the person with haunting sequelae and potential family discord among those who were not on the same page with such a decision.

Even with the disinclination of some cardiologists, they stand on firm ground when abiding the wishes of a fully capacitated patient. In 2010, a consensus statement was issued from the Heart Rhythm Society et al regarding the withdrawal of implanted electronic devices. While noting that there is more agreement regarding deactivation of defibrillators than of pacemakers, this document specifically and effectively erases any ethical distinction between types of implanted devices and endorses a patient’s right to have her pacemaker deactivated.

This case study reinforces the importance of written, specific, and witnessed advance directives. Implantable devices such as defibrillators and pacemakers are lifesavers at any age but can also uncomfortably prolong life at any age. Suffice it to say, clear advance directives and the outcome that an individual with an implantable device wants must be shared before a crisis…some suggestions are:

Assure the discussion with your cardiologist is an actual end of life discussion, even if you are relatively healthy and young. Is this documented in your medical record?

What are your wishes if you should become terminally ill or develop a debilitating neurological condition or dementia? Do you want deactivation of one or both devices?

Have you clearly stated your wishes in your advance directives? What are you asking of your healthcare agent/proxy if you should become mentally incapacitated? Is this very clear, in your words, in writing and witnessed?

Have you discussed this decision openly with your family members?

In our litigious society, patients cannot count on a cardiologist or a hospital ethics committee to accept the responsibility that Mr. Perry’s institution ultimately decided.

Not only do you help yourself by preparing for a health crisis, but you also help a reluctant medical community. Do you really want to trigger a debate over your right to withdraw medical treatment versus a concern about physician-assisted suicide to take place at your most vulnerable moments?

Patients have a responsibility to help themselves. Do not leave the decision up to others.